HouseH.R. 8794119th Congress
FED UP with Bleeding Disorders Act of 2026
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[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 8794 Introduced in House (IH)]
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119th CONGRESS
2d Session
H. R. 8794
To provide for increased research and initiatives related to bleeding
disorders in underserved populations, and for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
May 13, 2026
Ms. Johnson of Texas (for herself, Mr. Wilson of South Carolina, and
Ms. McBride) introduced the following bill; which was referred to the
Committee on Energy and Commerce
_______________________________________________________________________
A BILL
To provide for increased research and initiatives related to bleeding
disorders in underserved populations, and for other purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Fostering Effective Diagnosis and
Treatment for Underserved Populations with Bleeding Disorders Act of
2026'' or the ``FED UP with Bleeding Disorders Act of 2026''.
SEC. 2. FINDINGS.
Congress finds the following:
(1) Current data estimates that as many as 1 percent of
women in the United States may have a bleeding disorder, and
many are unaware of their condition.
(2) Women have reported delays in diagnosis of 16 years or
more.
(3) Increasing timely diagnosis for women with von
Willebrand disease aligns with public health goals outlined in
Healthy People 2030 supported by the Department of Health and
Human Services Office of Disease Prevention and Health
Promotion.
(4) Without diagnosis, women cannot receive proper care and
treatment from a provider with the requisite expertise, such as
a hemophilia treatment center, which provides specialized care
for people with bleeding disorders. Mortality rates and
hospitalization rates for bleeding complications from
hemophilia are 40 percent lower among all people who receive
care in hemophilia treatment centers than among those who did
not receive this care.
(5) Women with bleeding disorders are at higher risk of
adverse pregnancy outcomes.
(6) As many as 50 percent of girls and women who are
carriers for hemophilia A or B have factor VIII or IX levels
below 50 percent and are at risk for bleeding symptoms or heavy
bleeding related to menstruation or pregnancy. In severe cases,
a hysterectomy is a recommended treatment option for heavy
menstrual bleeding. More research into women and bleeding
disorders could help to avoid unnecessary hysterectomies and
preserve fertility.
(7) The annual direct economic cost of heavy menstrual
bleeding is $1,000,000,000. The annual indirect cost is
$12,000,000,000.
(8) Research into bleeding disorders and clotting factors
is beneficial for the United States military and its blood
research program as well as efforts to prevent or treat
bleeding that results from severe injury or trauma.
SEC. 3. INTERAGENCY REVIEW RELATED TO BLEEDING DISORDERS IN CERTAIN
POPULATIONS.
(a) In General.--The Secretary of Health and Human Services (in
this Act referred to as the ``Secretary'') shall conduct a review of,
and serve as the lead agency head responsible for reviewing, and as
necessary and appropriate, updating Federal programs, activities, and
strategic plans related to--
(1) the state of the science on bleeding disorders in women
and girls;
(2) training and education of providers on issues specific
to women and girls and bleeding disorders;
(3) access to treatment and services for women and girls
with bleeding disorders, including--
(A) care delivered at hemophilia treatment centers;
(B) care delivered in other clinical settings; and
(C) access barriers specific to women and girls
living in rural and underserved areas; and
(4) inclusion of women and girls in clinical research
related to bleeding disorders.
(b) Report.--Not later than two years after the date of the
enactment of this Act, the Secretary shall submit to the Committee on
Energy and Commerce and the Committee on Appropriations of the House of
Representatives and the Committee on Health, Education, Labor, and
Pensions and the Committee on Appropriations of the Senate, and make
available on the public website of the Department of Health and Human
Services, a comprehensive report on the review under subsection (a),
which shall include--
(1) a summary of the review, including a detailed
assessment of previous and ongoing research and activities
related to each area specified in subsection (a);
(2) a description of recommendations on how to improve on
each of the areas specified in subsection (a), related to
Federal programs, activities, or strategic plans based on the
findings of such review; and
(3) the Secretary's recommendations on areas for improved
coordination between relevant Federal agencies and programs,
including Federal agencies that focus on scientific and
clinical research, including--
(A) the Department of Health and Human Services;
(B) the Centers for Medicare & Medicaid Services;
(C) the Health Resources and Services
Administration;
(D) the Centers for Disease Control and Prevention;
(E) the National Institutes of Health;
(F) the Department of Veterans Affairs;
(G) the Defense Health Agency; and
(H) the Food and Drug Administration.
(c) Public Comment Period.--During the period of the review under
subsection (a) and during the period of preparing of the report under
subsection (b), the Secretary shall provide for a public comment
period. The Secretary shall consider comments received during each such
public comment period in conducting such review and preparing such
report, especially comments received from--
(1) individuals living with bleeding disorders;
(2) national bleeding disorders patient and provider
advocacy organizations; and
(3) entities receiving Federal funds under a Federal
program providing for research on bleeding disorders.
(d) Bleeding Disorder Defined.--In this section, the term
``bleeding disorder'' means an inheritable disorder which--
(1) involves an impairment in the blood's ability to form a
proper clot, including hemophilia, von Willebrand disease, and
rare factor deficiencies; and
(2) can cause extended bleeding (internal as well as
external), spontaneously or in response to injury, surgery,
trauma, menstruation, or childbirth.
SEC. 4. NATIONAL PUBLIC EDUCATION AND AWARENESS CAMPAIGN WITH RESPECT
TO WOMEN AND GIRLS AND BLEEDING DISORDERS.
(a) In General.--Not later than one year after the date on which
the report under section 3 is published, the Secretary, utilizing the
information from such report and in coordination with other Federal
offices and agencies, as appropriate, shall award competitive grants or
contracts to one or more public or private entities to carry out a
national, evidence-based education and awareness campaign with the aim
of improving awareness of, and diagnosis and treatment of, women and
girls with bleeding disorder.
(b) Consultation.--In carrying out the campaign under this section,
the Secretary shall consult with appropriate stakeholders, including
national bleeding disorders organizations, national provider
organizations, and the recipients of Federal grants relating to
hemophilia.
(c) Requirements.--The campaign under this section shall--
(1) be a nationwide, evidence-based campaign related to
bleeding disorders in women and girls that is aimed at women
and girls and at providers, including school nurses,
pediatricians, primary care physicians, family medicine
physicians, obstetricians and gynecologists, and hematologists;
(2) utilize strategies to ensure individuals living in
rural and underserved areas are reached;
(3) include culturally and linguistically appropriate
resources, as applicable; and
(4) include the dissemination of information and
communication resources related to women and girls with
bleeding disorders to public health departments, health care
providers, schools, medical schools and health care facilities,
including such providers and facilities that provide prenatal
and pediatric care.
(d) Evaluation.--The Secretary shall--
(1) establish benchmarks and conduct qualitative
assessments regarding the awareness campaign under this
section; and
(2) before the end of the last fiscal year for which
funding under subsection (e) is available, prepare and submit
to the Committee on Health, Education, Labor, and Pensions of
the Senate and Committee on Energy and Commerce of the House of
Representatives an evaluation of the awareness campaign under
this section.
(e) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $10,000,000 for each of fiscal
years 2027 through 2031.
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